Thursday, August 30, 2007
"What do you mean? Like, how did you get in my belly?" I ask, running my hand over her hair.
We're not really going to have this talk tonight, are we?
"No. How did people get in the world? Like, I came from your belly, and you came from your mom's belly and she came from her mom's belly but where did the first one come from?"
Hmmm, maybe the "other" talk would have been easier?
I snuggle in beside her.
"Well," I say, stroking her hair. "Some people think we started in the ocean. You know how we're all made of little tiny cells all put together to make a body?"
"Yeah." she nods, like she totally knows about cells.
"Well, they think we started out as one celled creatures, and then grew into two, then four, then eight, etc. going through all different types of animals like fish and reptiles, until a human was formed. That's called The Theory of Evolution."
"Uh-huh." she says, hanging on my every word.
"Other people think God plopped down two already formed, adult people, named them Adam and Eve, and that everyone started from there. That's called The Theory of Creationism."
She crinkles her brow, thinking for a second then asks, "What do you think?"
"I think they're probably both wrong. I think life is a great mystery and there are some things we just don't know."
"But why am I here?" She asks.
Pausing, I shake my head at this little girl who is only seven.
"I believe you're here because you wanted to be here. Because you knew it would be an adventure and you knew you would love and be loved."
I lean in and kiss her forehead.
How is it possible I have the most beautiful children in the whole world?
Easy....The Theory of Motherism.
"Good night Mom."
I schedule time to talk to his teacher, about his "special needs." I have to tell her about the MB12 shots he gets and why, and hope she doesn't think I'm crazy. Last year, I forgot to mention it and his teacher questioned me about the pen marks on his bottom. Before bed, we draw a little circle on their butts, then fill it in with numbing cream and cover it with a tiny piece of plastic. We give the shots while they're asleep so they don't feel a thing. Glad his teachers are looking out for him, but ironic I would be questioned about something we are doing to help the child, and in such a humane way.
"He does have a prescription?" she asked. As if I'm injecting my kid with some concoction I came up with at the health food store. What do I look like, a WWF wrestler?
We have Riley's first IEP meeting today. I've serious questions about whether they can teach to her level. They are wowed by what she can do, but she hasn't been taught anything new academically (though she has learned tons socially and gained a lot of confidence) in two years. The school aide talked with me about her screaming yesterday. Uh, yeah, I know. If you force her to be in a crowded place (gym) where little hyper boys are going to ram into her, expect it.
Other parents sitting near me seem so "gung ho" and I feel like I'm barely hanging on. No I won't volunteer to cart seven in my van to the first field trip. Pass the clipboard without even looking at it. Sorry.
Next week, Seth's school starts and I will have time to catch my breath a bit. I hope.
So, I'm sinking, but I got a great haircut, first time out of the gate here in Cleveland. It usually takes forever to find the right stylist.
That's something, right?
Wednesday, August 29, 2007
We were watching it on the news and they described the elaborate "tapping the foot in the stall" that's apparantly a signal for those on the DL(down low), lookin' for action in public bathrooms, and HT says,
"I wouldn't have a clue. I'd be like, what is this, Mr. Ed?"
Tuesday, August 28, 2007
It got me thinking about a lot of things. Hot Toddy,(bless his little heart ) is always fascinated by my train of thought. "How did you get there, from there?" he asks and then nods along amused during a detailed explanation of the ride.
So if you're interested, climb aboard. (The train is about to leave the station but it'll wait for you to get your coffee).
Kelly's post led me to think about my dear friend's husband who died of AIDS in the 80's. He was a closeted bi-sexual. He was beautiful and brilliant and at the height of his career, but due to his illness and death he wound up leaving my friend and their young son to struggle in poverty for the next two decades. (She prevailed, became a successful artist. Her son is an expert martial artist).which led to....
The AIDS epidemic is so much like the autism epidemic it's scary. Government agencies pretending to give a damn, but not. Subterfuge. Controversies and conspiracies. Big Pharma calling the shots. Money mattering more than people, more than children. And the band played on.
which led to...... my memory of the AIDS quilt. 1993. I was working in DC, out for a weekend walk, headphones in place, the Indigo Girls. A light hearted day, and then, the idea, "Why not stop and see the quilt?" and then, there it was, covering up the whole National Mall. It went on forever. Every panel, a life. A family. Someone's story. I asked a volunteer to help me find my friend's square. "Hi Dad," "I miss you." and "I want to be a paleontologist when I grow up." A scratchy drawing of a dinosaur.
Moving from panel to panel, I remember being knocked to my knees. I wasn't ready for this. A faceless volunteer pressed tissues into my hand. The gesture was so humane. So kind. No words.
which led to.... would an autism quilt be bigger than the AIDS quilt? I don't know. I imagine it would be with one in 150 children affected.
and back to the video.... Axl Rose shoots onto the stage like a bullet. Like Freddie Mercury. Like Elton John. So full of life. So brightly lit. So unwilling to conform.
which made me think about......My comment on Kelly's blog which read, "so poignant, Elton John singing Freddie Mercury's words. One made it. The other one didn't."
which led to...... a questioning of my own words. Saying someone "didn't make it" does not jive with what I truly believe, which is that all souls decide when to arrive and when to go. Freddie Mercury "made it" just fine. Can I please stop questioning the wisdom of other souls?
which led to.... me and my boy listening to Queen in the car.
Stomp stomp clap.
Stomp stomp clap.
Seth, almost five,
blond hair flying in the breeze, and
"champion of the world."
When changes are brewing, my hair is the first indicator.
I'm itching to cut it off.
I want one of those computer programs, where you scan your picture and check out different styles.
Anyone know where I can find one of these?
The hair. Presently, it's long and shaggy (think 60's throwback to Woodstock). Not attractive.
It's gotta go.
I'm thinking maybe a pink mohawk?
Just checking to see if you're paying attention.
Sunday, August 26, 2007
HT was outside with the kids and I was inside, making popcorn (we're adding corn back to the diet this week!) to bring outside. As I headed out the front door, I did a double take, Riley was in the police car, full sirens blaring. Smiling. Not covering her ears, not clinging to Todd in a panic.
At one point she had three little girls in our house, watching the new computer activities she's currently jazzed about. She had some minor social issues, getting bent out of shape when one girl who'd been playing with her decided to do something else. She ruminated that her new friend must not like her anymore and no amount of reassurance could convince her otherwise. But that was the end of the day, and she was tired.
Overall it was a very good experience.
* Visit http://www.starfall.com/ for the free computer activities Riley is into these days. They are great for the elementary school set.
Instead of: "Seth, you are a bad boy because you aren't doing what I want you to do right this moment. "
I could say: "Seth, Mommy can't deal with the fact that you aren't doing what I want you to do right at this moment."
He still has to obey (I mean...if he wants to live under my roof, right?....kidding)!
Or how 'bout this for the older child?
"You have to go to church because I said so."
"You have to go to church because it's important to me and I feel like I'm failing as a parent if you don't go."
If church is your thing, the kid still has to go, but it's clearly about you, not a character issue with them.
Because it is...you know.
It's always about you.
I mean, me.
Friday, August 24, 2007
What I love about this interview, besides my mention (wink,wink) is the description of her reading "to do" list. You either get that, or you don't. As someone who is always in the middle of a few books (one on autism, one memoir, one on spirituality, one on neuroscience,etc.) I appreciate that.
We should all post a picture of our nightstands. Wouldn't that be fun?
Thank you Lisa for the mention. It is always an honor when someone throws a few kind words in my direction, especially a person as writerly as yourself!
Thursday, August 23, 2007
He works for the hospital, not the drug companies. His job is to take orders from the doctors, enter them into the computer system, check for potential drug interactions, side effects, etc. Basically, he double checks the physicians, making sure the patients have the right meds in the right doses at the right times. He is not in charge of ordering meds, but if he sees a discrepancy, he can suggest something else if a doctor is humble enough to ask his opinion. He's a watchdog, with limited power.
Pharmacists have 5-6 years of training and know the ins and outs of, well, pharmacology. I've heard medical doctors have something like, one to two years of pharmacology.
Todd has saved more doctor's butts than I could ever count, and he should. That's his job. Some docs are nice. Some treat him like crap. Residents begin nice, and often by the time they become doctors they start with the condescending nonsense (they do it to nurses too).
So what's a guy supposed to do, when his livelihood depends on the very industry that is putting profit before patient safety, harming our kids, controlling our government, and our media?
For now, we reconcile Todd's career choice with the fact that patients are safer for him being there. He is very good at what he does. Trust me, if you wind up in the hospital, you want him there, filling your meds.
Even though Todd is paid by the hospital, not the pharmaceutical industry, exposing what we know about big pharma does sometimes smack of biting the hand that feeds us.
Some masters just deserve to be bit.
Wednesday, August 22, 2007
At pick-up, the director tells me Ms. teacher, (you know the one Riley asked to hold hands with last week?) is resigning. ASAP.
So. I could go a lot of places with this.
Through a series of random events, (at another open house I went to, the next client that walked in after I left teaches an Asperger's program at a local public and the realtor I'd never seen before called me with her #) I was hooked up with a woman who gushed on and on about her program. She described a school environment within a public that sounds like a dream. They put the Asperger's kids all in one regular class, and the regular teacher and the special ed teacher work together, so the kids get tons of typical peer interaction, and also the support they need. She said the typicals are very protective of their Asperger's peers. (Do you hear the choir singing)?
The school's neighborhood is more affordable than the one we're currently in. And still cute. I drove all around it today.
It might be too late or too hectic this year to start something new, but maybe. Or maybe by next year we can move to that neighborhood and get her in that program. Who knows? But I'm not about to freak over the teacher quitting when this benevolent universe keeps opening doors for us.
And that, my friends is progress.
Open, open, open, open, open.
Sunday, August 19, 2007
Did you know, in every country except the U.S., advertisements for new drugs are not allowed, in order to avoid a rush for new medicines that have not been around long enough to determine safe use? Go figure?
The pharma reps that are beating down the doors at your physican's office are not medical people. They are sales people. They wear physicians down and offer them lots of perks. They build relationships with starving, tired, overworked, insecure residents and often go on to become the only continuing education most busy medical doctors recieve.
Chances are, the choice of drugs your doctor prescribes has more to do with who brought the best lunches(or country club memberships, or trips to Hawaii), than which medicine is the best fit, or most affordable for you.
Combine that with the fact that Pharma owns our government (four lobbyists in DC for every member of Congress) and our media(again...all those pretty ads).
People, the only thing we've got left is our Inner Guidance. Good thing it's bigger than Big Pharma.
Y'all better use it.
Thursday, August 16, 2007
Wednesday, August 15, 2007
Two small meltdowns on the playground. Someone got too close. Another one ran away with the ball. The nerve.
Not sure if her class is the right fit. The other kids seem to be functioning at a much lower level based on my in depth two minute observation at pick up.
She might need to switch to the next grade level. We'll see. I'll be watching closely.
And breathing. I'll be breathing.
Tuesday, August 14, 2007
I didn't do my work.
I neglected something.
I'm an idiot.
How could I have forgotten?
This morning, I walk my baby girl into her new school. Her fourth school in four years.
"Mommy will you stay with me?"
"I can't Sweetie."
We talk about being brave.
"Riley you are the bravest person I know." I tell her.
She looks up at me like she doesn't believe me and squeezes my hand.
Squeezing her back, I say,
"Being brave is being afraid, but getting through it. And you always do that. You may get scared, but you always get through it."
"Yeah." she offers.
We enter her class, and she walks right up to her teacher.
"Excuse me, Ms. M? Will you hold my hand please?"
Did I do my work?
Did I neglect something?
I hope I haven't forgotten anything.
But....she advocated for herself.
She's going to be just fine.
Another first day.
We're both getting through it.
Monday, August 13, 2007
Sunday, August 12, 2007
There's that thing with autism moms. It's a look in the eye. You just know each other.
Met Kim last night in person. They lived in Cleveland for a long time and they were in town, celebrating her husband's 50th birthday with friends.
They were kind enough to invite us to the party. Todd and I hired a sitter and it was heaven to get out. We ate, we drank, we engaged in adult conversation!
Today, we met at the park and had the opportunity to meet two of her adorable girls. Mia and Bella.
Riley pushed Bella gently on the swing. It was a big deal because Riley is usually terrified if she's anywhere in the vicinity of a moving swing.
Kim is as funny and
personable in real life as she is on her blog. Anyone who reads her knows she's a great writer, but not enough can be made about what a good mom she is. She's got three on the spectrum and they are affected much more severely than my Riley. Somehow she just does it, and she does an amazing job.
I'm in awe.
Oh...and look at her.
I'm not worthy.
Saturday, August 11, 2007
stuffed animals. You insert a coin and try to grab a prize using
levers to maneuver a metal claw.
Seth says, "That looks like fun."
Trying to disuade him from asking for quarters, I say, "Yeah, but it's really tricky. You don't always get a toy." Honestly, I can't deal with the crying that will ensue when it doesn't work out.
He replies, "Mom, you just have to close your eyes and be the crane."
Hot Toddy and I laughed all the way to the car.
After everyone was buckled in Todd asked, "Where'd you learn that, Seth?
Friday, August 10, 2007
Meet Chuck. He was sitting at home, minding his own business when destiny called.
"Charles Dowdy the third?"
"No, just Chuck Dowdy, straight up."
"You'll do. Want to be an extra in a movie?"
"Do I? Where do I sign up?"
My friend was sure it was a scam, but her husband, driven by a Hollywood dream went downtown and sure enough, it was true. Her man will be featured in a movie called Love 'n' Dancing (http://www.lovendancing.com/), about a West Coast swing dancing champ who's deaf.
At first, he was just an extra, but the director, being no dummy, recognized Chuck's range, and soon upgraded him to "stand-in." He was immediately ostracized by the other jealous extras, but paying them no heed, he held fast to his art.
No love for the haters, people.
When you see Love and Dancing, (which I know you now will), look for Chuck. He's the "business man" sitting directly in front of the window reading a paper (from 2006) and drinking iced tea (which is fake and unfortunately not very tasty). Chuck even took it upon himself to do some improvising, looking at people who walked into the restaurant, pretending to answer his cell phone, etc.
Chuck's wife is sorry she ever doubted him.
As her friend, and someone who knows Chuck personally, I'm taking it upon myself to start his first fan club.
Thursday, August 09, 2007
Riley said, "I'm glad you came to my house. I hope you come here again."
As she was wheeled down the sidewalk toward home, Riley and Seth ran across the lawns in their barefeet, waving, "Bye! Bye! Bye!"
We'll see her again this weekend, on stage.
How cool is she?
Wednesday, August 08, 2007
The realtor was sitting at the dining room table, fiddling with a lap top or so it seemed. I walked in, and as I signed the sheet, I noticed the listing rep was not the guy at the table, but my neighbor. She's a realtor. She let us into the house when we moved in.
I told the guy at the table, "Terry is my neighbor. She lives down the street from us."
He one upped me.
"She lives in my house."
It was her husband, evidently he's a realtor too.
We got to talking. They have a little girl, ten years old with cerebral palsey. She doesn't walk. She uses a computerized communication device. That's what he was fiddling with. He was giving it a tune-up before school starts as he sat around waiting for clients to trickle in.
Their daughter is really bright, but she can't do a lot of things other kids do, so her friendships are very limited. She needs an aide at all times.
Our daughter does really well with quiet one on one.
As I type, she's on her way over to watch a movie with Riley.
Turns out the house was really ugly, but this just might be the start of something beautiful.
Monday, August 06, 2007
In the meantime, please join me in welcoming new blogger Kathryn Johansen. Her son Liberty is on the spectrum and she will be chronicaling their healing journey into bio-med therapies.
Scroll down and look at his picture. How cute is he?See ya when I see ya.
And not a minute sooner.
Riley came up behind him, put her arms around him and said,
"Seth. Don't be sad, I love your art." They hugged and he seemed to feel a little better.
"Even if it isn't that good." She added, in the most sincere and loving tone imaginable.
Saturday, August 04, 2007
Friday, August 03, 2007
We moved here specifically for this school, so a lot seems to be riding on it. I try to calm myself, thinking surely, she can't be the worst case they've experienced. But then again....you never know. She sure can scream when she's afraid.
Usually, I would rattle off a post about my anguish, but something is different. I didn't write about it because I didn't want to add energy to the worry, the negativity, the fear. Not to be Pollyanna and act like everything is okay when it isn't, or pretend I'm always sunny. I'm definately not.
But this week I made a concerted effort to meditate, to read a lot, to talk over my fears with Todd, to do yoga, to take an epsom salt bath, to really listen for what I believe.
I believe in a benevolent Universe. I do.
Today, Riley came up to me and hugged me around the waist. When I looked down she was all puckered up, waiting for a kiss. The unsolicited hugs are fairly new, but the kiss? First time ever.
Tonight in the tub (my second relaxing bath this week), I felt for the first time, this child is absolutely going to recover. I imagined her getting married, if she wants to. Having kids, if she wants to.
And here I am, writing about it.
Join me in fanning that flame, won't you?